Yet we go forth…

It has been some time since I posted, with several attempts which did not gain enough momentum to be completed. My wish is to have happy news, unrestrained. In the absence of that, and due to continual demands here, I have not been able to carve out the time to sit at the computer and sift through all that is happening and construct it into words. Many twists and turns, many obstacles, many moments of exasperation, yet we go forth.

Naked truth this morning: Dannie continues in excruciating pain. She is in a minute to minute survival experience still. ~10~ pain, throwing up at 3 a.m….We herald the moments when she is able to break free enough to have a moment of extraordinary, approximated, normalcy… like sitting up in bed and chatting about something other than pain, like laughing at a “America’s funniest home videos”-yes, in Delhi, like a breif venture out in her wheelchair that took days to work up to, like eating a meal and not paying for it with paralyzing pain or throwing up. Sliding sideways, baby steps toward normalcy… and we rejoice.

Holding On

The stem cells are working, as indicated by retracing… waiting for the relief to come. We know it may take several trips, yet we still expect and have hope that some relief will be eminent. More so, we pray for sudden, miraculous and complete healing to trump all other efforts.

Ari is retracing some of his most difficult symptoms right now, as well. He has the recent memory of feeling great to easily recall… while working through the return of nausea, exhaustion, hot and cold sweats, altered cognition, shooting pain… to name a few. He is having “end of journey jitters” wanting to be home right now while at the same time wanting to stay to focus on pursuing some business ideas he has for pro-typing a handbag line that he has been sketching for some time, and exploring manufacturing options. Next trip! Ideas abound, time and energy are limited!

getting ready for procedure

I am great. I am! I have moments of grieving, moment of sadness, moments of cell-shaking tears, moments of feeling that I cannot watch/hear/sense my son or daughter suffer one more thing, one more moment of distress of any kind, one more parried effort to reach out toward life, one more aspect of human existence again deferred, one more insensitive comment or action, one more admonishment that change is coming, is coming, is coming for twelve years and counting. Yet in the midst of this, I have many more moments of quiet, settled, resolve to see this through, whatever comes.

Then there is joy… which springs forth in the midst of writing, talking, or reflecting on the horror of it. Side by side… the endless sadness and boundless faith and hope.

My mantra continues to be faith, not fear! as a prayer, as a meditation, as a reminder to breathe, as a reminder that there is always always always choice.

Spring outside the window

Ari is returning home May First!!!!! I miss him already. His presence, his smile, his attention to logistics, his insistence on excellence for his mother and sister … his love expressed clearly and directly have been pure joy and sustenance for me.

Treatment concludes on the nineth.~Kyler will return around the tenth as close to when Dannie and I leave as possible… taking care of Dannie with dedication, patience and humor. When we left Belmont, we anticipated that I would come home after a month, and tag-team with another caregiver for Dannie. Her deteriorating medical condition made that impossible, thus I am still here with Kyler’s much needed help. Because of her unexpected stay in ICU , her treatment period was extended; our original flights to return now obsolete.

Kyler by Dannie's side

We are now having difficulties with securing flights with the remaining air miles for the two of us, and not certain yet if we will need a doctor to fly with us, as we did on the way. As it turns out, we do not have enough air miles for the two tickets (as her pain and sensory sensitivity to noise, light, movement, and touch…still requires First Class to be in as quiet, calm and restful environment possible) We had hoped that Dannie’s pain would have subsided enough to feel confident that the two of us could go it alone without a doctor, and her condition would not require First Class. Doesn’t appear so at present, and we have no MD on board for the journey

That said, if anyone has any air miles to help that would be fantastic. However, we are finding that air miles are not that easy to use, as there are limited flights available to be “purchased” with air miles… so it may be that we find ourselves having to purchase tickets. That is in the context of needing to get home as soon after the ninth as possible.

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Kate, I remain at your side as you go through this never-ending journey – ours, mine and Jason’s, is nowhere close yet to what I had hoped it would be at this stage. There is always something holding back his road to healing and health and I am quietly dealing with frustration and questions….always questions….will the treatments ever really help? I am so sorry to hear that Dannie is still experiencing so much pain and discomfort and that Ari is experiencing his share of difficulties. How hard it is to be a parent with so little control and such feelings of helplessness. Where do we ever find the strength to give the kids the ongoing support that they so desperately need? Hang in and just keep showering them with love!

Kate, Ari, Dannie and Kyler.. Spring as sprung in your yard! I was there with Michael ( who I just LOVE) this weekend putting in a few finishing touches…Renewal , color , hope is flooding into your home! The Lord is a Lord of details and we will be praying for the details of the journey home for each of you. Lean hard into Him .. He is listening and answering our prayers. I am praying daily for each of you. Isaiah 40:31

Your faith and perspective is amazing and I know it comes from the peace the passes all understanding, from Father God! I will continue to hold each one of you up in prayer, thoughts and trust that God will provide for every need.

Background In the fall of 2001, Ari and Imani (Dannie) became very ill. This caused them to be unable to attend school, due to tremendous pain and discomfort. Subsequent to a flood caused by a pipe burst in their San Carlos, California, home, toxic mold growth was discovered, to which their ... Continue reading →